More than 1.4 million Americans live with these diseases, yet most people are unfamiliar with them, thinking that IBD and irritable bowel syndrome are synonymous, or downplaying the symptoms.

“One of the most challenging things is that every patient’s disease is different,” says Rick Geswell, president and CEO of the Crohn’s & Colitis Foundation of America. “We know that what works for one patient, may not work for another. And it’s so unpredictable. Some patients are so sick that they can’t even leave their homes. Others may have mild disease for most of their life and then all of sudden they flare and land in the hospital. That’s why it’s so important for all patients to rally together — especially during awareness week.”

As Geswell says, it’s hard to grasp the reality of living with these diseases. So in order to explain what it’s like have an inflammatory bowel disease, I asked several patients to share their experiences.

These diseases have been known primarily as “pooping diseases” because many patients frequent the bathroom as a result of the cramping and abdominal pain caused by IBD. However, there are many aspects of the disease that are far worse than spending time in the bathroom.

Here are 10 things you didn’t know about IBD:

IBD patients often take many medications with powerful side effects.
Patients with IBD often depend on medication to control the inflammation and pain caused by their disease. Medications commonly used include antibiotics, anti-inflammatories, steroids and immunosuppressants.

While beneficial, these medications can cause side effects including nausea, vomiting, heartburn, night sweats, insomnia, hyperactivity, high blood pressure and stunted growth in children. Patients on immunosuppressants are at risk of developing lymphoma, tuberculosis, kidney and liver damage, anaphylaxis, seizures, and serious or fatal infections.

IBD causes extraintestinal issues.
Crohn’s disease and ulcerative colitis can cause issues in other parts of the body, including inflammation of the inner part of the eye, mouth sores, arthritis, osteoporosis, gallstones, kidney stones, skin rashes and ulcerations, blood clots, anemia and several neurological conditions, including seizures, stroke, myopathy, headaches and depression.

Having IBD is exorbitantly expensive.
The annual direct cost of Crohn’s disease and ulcerative colitis in the United States is estimated to be $6.1 billion. A recent study showed that the mean annual cost for a patient with Crohn’s was $8,265 and for ulcerative colitis was $5,066. Each patient’s situation differs, but the most common costs of IBD include diagnostic tests, hospitalizations, surgery and medications, some of which can cost as much as $10,000 per dose.

In the six and a half years that Dan has been treated for Crohn’s disease, he has lucked out in that, for the most part, he has not experienced any serious side effects from medication. Asacol did nothing to him (in fact, it didn’t even help him). The only other medication he’s been on is 6-MP and that gave him terrible fatigue so severe that he could barely function.

Remicade

For the past 3 years, Dan has getting Remicade infusions every six weeks. He suffers very little side effects from it- in fact, the only thing he feels from it is sleepiness after the infusion caused by Benadryl and a slight headache. These all pass within a few hours to a day of the infusion.

As you know, Remicade can cause a variety of side effects ranging from mild ones like headaches, stomach pain or nausea to serious ones like joint/muscle pain, vision changes and anaphylaxis. Dan’s reaction to the medication, so far, has been on the mild side (knock on wood).

However, for over a year now, we have been baffled by one side effect he’s been experiencing since being on the medication – extreme thirst. Dan is extremely, insatiably thirsty every day. He has some days where when he wakes up, the thirst/dehydration is so bad that he feels nauseous and ill. He drinks constantly throughout the day but nothing seems to help his thirst.

I can’t believe we are almost at the end of the alphabet! There will be one or two more posts after this one and then my glossary of Crohn’s & Ulcerative Colitis will be completed. But before we get to that point, we have a few more letters to get through.

This has been a great year for Caring for Crohn’s, both on the blog and personally.

After toying with the idea for several months, I finally launched the blog in June. After a few months on Tumblr, the blog was merged onto WordPress and now here we are!

In just six months, I wrote 73 posts and the blog received over 3,600 views, and gained 19 WordPress followers, 50 Tumblr followers, 124 Facebook fans, and 175 Twitter followers. Thank you all SO much for your readership and support– this blog branched out beyond my wildest dreams and I am so appreciative of all of you who made that happen.

Without further ado, here are some of the 2012 highlights for Caring for Crohn’s!

Anyone with a disease knows just how expensive it is to live with a chronic illness. The medications, doctors appointments, surgeries, emergency room visits, and everything in between- it all adds up over time. In fact, I just went back through our records and since we got married in 2009, give or take a bit, we have spent over $4,000out of pocket on Crohn’s related expenses.

I feel unbelievably lucky that Dan and I have health insurance because of the high medical costs associated with Crohn’s Disease. Every six weeks, Dan goes to his doctor’s office to get his Remicade infusion. So every six weeks, we pay a Remicade copay. We also pay for parking at his doctor’s office, wear and tear on the car (its a 60 mile round trip from our house to his doctor and back), gas, copay for check ups every four to six months, and for other small procedures periodically (bone density scans, colonoscopies, CT scans, etc.).